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At camp, solace for children of cancer patients

A group of children plunged into the lake Center Tuftonburo, N.H.

Colm O'Molloy for The Boston Globe

A group of children plunged into the lake Center Tuftonburo, N.H.

CENTER TUFTONBURO, N.H. — The profiles on the children at Camp Kesem read like the notes that counselors at any camp might make on their young charges: “Fun and caring.” “Allergic to steroid-based meds.” “Happy, self-reliant.” “Upset by bullies.”

But interspersed with such comments are others, stark reminders of why these kids are spending a week in the idyllic Ossipee Mountains: “Father has stage 4 colon cancer,” “Mother’s cancer is spreading to both lungs,” “Mother is doing well from several cancers,” “Father left the state shortly after mother started chemo.”

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Each summer for a week in August, Camp Kesem — it means “magic” in Hebrew — opens its doors to children ages 6 to 18 who have a parent either battling cancer or in remission or who has died from it. It is operated by a group of Massachusetts Institute of Technology students who do it all, from raising money so that the sleepover camp is free, to running the program itself. The students are the counselors and administrators. No one is paid; in fact, each counselor must raise at least $400 for camp.

Camp Kesem’s philosophy is similar to that of any other summer camp: Kids want to have fun. But these kids, more than most, need to have fun, away from the constant reminders of the cancer that has taken up residence in their homes: a parent’s hair or weight loss, the medical appointments, the children’s own fears and added responsibilities.

“Besides worrying about their parent’s health and moods, some of our kids end up having to take care of siblings too,” says Angela Ma, this year’s co-director and a senior at MIT. “Sometimes, they have to grow up too quickly.”

Counselors and kids

On a recent day at camp, Ma, 21, from Carmel, Ind., is a perpetual motion machine, barking into a walkie-talkie, hiking all over to check in with kids and counselors, singing silly camp songs during lunch and comforting a child here and there. One camper this summer has two parents dealing with cancer.

Hamsika Chandrasekar, who graduated from MIT in May and is at Stanford Medical School, has been involved with Kesem since she was a freshman. She remembers her first summer, when she was assigned to the youngest group.

‘At school, people just stare at you awkwardly. Here, no one treats you differently because of the cancer you have at home.’

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“I had a 6-year-old girl who mentioned how her mom often couldn’t get up to make lunch or dinner or take her to school. This little girl had to clean and make food. They would have cereal for dinner,” she says. “Basically, what the kids get out of camp is a week of not having to worry about such things.”

In a role reversal, Chandrasekar says that counselors learn resilience and empathy from the youngsters. “Listening to the kids speak and watching them comfort fellow campers with hugs and smiles is so touching,” she says. “Yes, there are tears at times, but the kids are so hopeful and so positive.”

In 2001, the first Camp Kesem was founded by a Stanford student who had family members affected by cancer. In 2006, the MIT chapter formed after an incoming freshman, Caroline Huang, lost her grandparents to cancer. That first year, there were 13 campers and 18 counselors. This year, 111 campers were supervised by 62 counselors. The session ended Friday.

There are now 41 camps across the country, each student-run; the MIT chapter is the only one in New England. But with help from the Livestrong Foundation, 12 more university chapters will open next summer.

Word-of-mouth is how most campers find their way to Kesem, and MIT students distribute fliers to Boston hospitals. Some of the kids have been to camp several years.

This was Justin Chang’s fifth time at camp. He’s 12, from Middleton, and his mother has breast cancer. “She got it five years ago, when I was 7,” says Justin, who goes by the camp nickname “Mr. Chang.” Each child and counselor picks out a nickname, and is called that throughout the session.

“Camp is a really happy place, really optimistic,” says Justin, who shows a ready smile and sports a Red Sox hat. “My mom’s doing OK. The people here are really cool, and there’s a lot to do.”

His friend, Garrett Holzer (“G-Man”) is here for the sixth year. He’s 13, from Oxbridge, and lost his father to cancer when he was 7. “I don’t see how anyone can be sad when they’re here,” he says. “You’re having too much fun.”

Both boys say that their camp friends understand each other on a level that friends at home can’t. “You’re comfortable here talking about your loved one,” says Garrett, who has spoken about his father during the “empowerment circle” held one night each session.

“I tell the story of how my dad died,” he says. “No one says, ‘Oh really? Your parent passed?’ Here, they understand why and how.”

Paying for it all

Camp Kesem pays $30,000 to Camp Merrowvista for a week at the sprawling, wooded site with updated cabins, an activities barn, dining hall, and lakefront with canoes and kayaks. The MIT students raise money through various events. This year, the goal was $70,000; they raised $80,000. Next year, they figure they’ll need $120,000 to expand to a second week.

“As college students, we don’t have corporate contacts,” says Chandrasekar, who now serves on the camp’s advisory board. “So grants are tough.” They get some support from MIT, and an occasional donation in lieu of flowers upon a parent’s death.

One fund-raising event this year was “Stuff My Cup,” which took place at the Boston Marathon, before the bombings. Male counselors wore flamboyant bras and asked people to stuff a few bucks in them. They raised $6,000.

Dylan Soukup (“Tiger”) was one of them. He’ll be a senior at MIT this year, and brings a unique perspective: He’s a cancer survivor. As a baby, he had a neuroblastoma and later attended a camp for kids with cancer, where he became a counselor.

“What really brings it home for me is that my brother went to camp for siblings of those with cancer. My parents were so focused on me,” says Soukup, 21, a rangy redhead. “These kids don’t get to have the whole attention of their parents, who have so much on their minds.”

The camp day includes the usual swimming, arts and crafts, sports, and, for teens, long hikes and an overnight camp-out. There are the requisite goofy camp songs, nightly cabin chats led by counselors and “empowerment night.”

There is also an oncology session.

One day each year, Dr. Eli Van Allen (“Flash”) comes from the Dana-Farber Cancer Institute to answer children’s questions. He addresses three different age groups, and the kids can ask whatever they want — if they choose to go.

As a Stanford student, Van Allen was involved in the founding of Camp Kesem, and serves on the MIT camp advisory board. Sometimes kids will ask, “What’s my chance of getting cancer?”

Hannah Farrell, 13, from Hudson, lost her mother to cancer two years ago. “At school, people just stare at you awkwardly,” says Hannah, known as “Peanut” at camp. “Here, no one treats you differently because of the cancer you have at home.” She and her twin brother, Matthew, have attended Camp Kesem for five summers.

Most of the campers, particularly the older ones, know too much about cancer, and can cite various medications, doses, and side effects. “My mom has a stage 3½ brain tumor,” says Rosa Carmichael (“Meerkat”), 13, from Long Island. “I just don’t talk about it at school, but you can here because people know what you’re talking about. We’re all kind of in the same situation.” Her younger brother and sister, 11 and 8 years old, also attend camp.

Seven years ago, at 39, Melinda Longtin was diagnosed with early-stage breast cancer. She heard about the camp from a friend and thought it made sense for her kids, Daniel and Andrea, who are now 16 and 14.

“Four years ago, I had to take my son to camp screaming, and now he can’t wait to go,” says Longtin, who lives in South Berwick, Maine. “Both of my kids love it. It’s created a network for our family to have a safe place to talk about this stuff with other people with a mutual understanding.”

Many of the campers stay in touch during the school year. When one’s mother died in April, a group got together and attended the funeral in Newburyport. “I think they just have a different compassion for one another,” says Longtin. “A lot of the kids feel like they’re being pitied by others, and that’s not what they want.”

Her son Dan (“Nike”) wears an Indiana Jones hat at camp and says he’s made close friends. “It’s great to meet kids who have the same thing going on in their lives as you do,” he says. “They understand what you’re going through on a day-to-day basis.”

His friend Emily Lawler nods as he speaks. Her father has metastatic colon cancer, which he has been battling for eight years. “It’s returned three times,” says Emily (“Madras”), 18, from Haverhill. “You just have to look for the little victories in treatment.”

Emily is about to start her freshman year at Boston College, and has attended camp for three years with her 15-year-old sister. “I’m more closed off about my feelings, but here, I don’t feel the need to put up a front,” she says. “This is one place you can show emotion without any consequences.”

“Leggo,” also known as William Legg, 9, from Amesbury, knows this well. He’s had four years at camp, along with his two teenage brothers. Their mother has lung cancer. “I’ve been coming here since I was 6,” says the handsome boy with white-blond hair and blue eyes.

But he’s blinking back tears and can say no more. An older camper rubs his back, and soon they take off, looking for fun. “Leggo” is laughing now.

Bella English can be reached at english@
globe.com
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